Power Grid Blog
From the Front Line in Illinois: The Fight to Close State Institutions
February 21, 2013 | Amber Smock
I remember the first time I ever visited Jacksonville, Illinois. A colleague drove me to a meeting and we went through the historic area of the town, with large, beautiful old houses. And all I could think was that some of those houses were built on the backs of people with disabilities without their consent and on the tears of families with no choices. Surely the residents of those lovely homes believed they were providing a good service to society: doctors, psychiatrists, and superintendents.
At that time, Jacksonville was home to the Jacksonville Developmental Center (JDC), the largest and oldest Illinois state institution then serving people with developmental disabilities. The town is also home to the Illinois School for the Deaf and the Illinois School for the Blind. And yet…while students at the Blind and Deaf schools come to learn in the most appropriate environment, according to their individual education plans, they get to graduate and leave. Perhaps they stay in Jacksonville. More often they go on to make their lives in other places. The residents of JDC, however, were generally there until they died or were moved to another facility.
JDC opened in 1847 as the Illinois State Hospital and Asylum for the Insane. It was the first state institution in Illinois and only the third state institution in the nation. Over the years, the state of Illinois opened twelve more state hospitals and institutions. JDC eventually phased out serving people with mental illness and turned to solely serving people with developmental disabilities.
These institutions have been an economic blessing for many Illinois towns and the only service option for thousands of families struggling with supporting someone with a disability. Today, disability rights activists view these institutions as blatant segregation. However, families- especially aging parents- see these facilities as the only arrangement that they know to work for their loved one with a disability. Institution workers also oppose the closure of the facilities, since it means losing their jobs. All of these groups see their issues as fundamental and non-negotiable.
The trend among states for the last few decades has been to close large state institutions for people with developmental disabilities. The process is usually driven by advocates with disabilities and parents; allied closely with state administrators. While one would think that the Olmstead Act, would be a winning point of argument. The truth is that more often money is what really shuts the institution down. Illinois spends $57,000 to $182,000 a year in state and matching federal dollars to institutionalize a person with a developmental disability, as opposed to an average of $45,000 to pay for a small group arrangement or $19,000 to cover assistance at home.
Illinois’ budget is in shambles. Its credit rating continues to go downhill. Back bills are not paid, the deficit grows ever larger in part due to horrible pension planning, and it needs a revamp of its tax structure in order to generate more revenue. When Illinois’ Governor Pat Quinn first announced in 2011 that he wanted to close JDC as part of a rebalancing initiative, his reasoning was not just that it was a matter of civil rights and quality of life, but that in the long run Illinois would save money.
Predictably, bitter emotional battles broke out when the Governor made his announcement. JDC families, AFSCME workers, disability rights advocates, the city of Jacksonville, legislators, state administrators; everybody was in it to win it. Tensions ran so high that when I drove with colleagues into Jacksonville for a hearing one afternoon, we were greeted with so many “Save JDC” lawn signs that it was clear the townspeople were advising us not to be in town when the sun went down.
I have many memories of the fight. I still see the frustration and weariness on the faces of the state legislators, sitting on the commission overseeing facility closures. The 400 people in the hearing gym wearing “Save JDC” paraphernalia, while maybe 30 disability advocates stood their ground to show their opposition. Hearing the pain of the parents trying to do their best. But most of all, and most angering, is the memory of several JDC residents being walked to a hearing table and one by one telling the audience that the reason they needed to live at JDC was because they were bad people, with bad behaviors; who hurt others. They had been robbed completely of their self-respect. That, above all, is what institutionalization does to you.
In the end, civil rights won (as did the fiscal argument and the shabbiness of JDC’s facilities). JDC’s last resident moved out in November of 2012.
Since 2000, the state of Illinois has now closed three state operated developmental centers. Seven remain open. Will it be just six in two years? Governor Quinn has next proposed to close a developmental center in Centralia, where families and facility workers have already begun organizing aggressively against closure. And so it goes.
Today, thirteen states and the District of Columbia (1991) are institution free. These states are: New Hampshire (1991), Vermont (1993), Rhode Island (1994), Alaska (1997), New Mexico (1997), West Virginia (1998), Hawaii (1999), Maine (1999), Michigan (2009), Oregon (2009), Minnesota (2000), Indiana (2007)*, and Alabama (2012). If you live in one of the thirty-six states where the state institutionalizes people with developmental disabilities in large congregate settings, please check out the National Council on Disability’s Deinstitutionalization Toolkit for resources, including closure plans.
*Challenges in Developmental Disabilities: State of the States, State of the Nation, 2011, D. Braddock, Ph.D., Arc US Convention.
Comments
Submitted by Barbie at 11:23 AM on March 11, 2013